It was a difficult day when Debashree, a bright young architect was diagnosed with Tuberculosis. Life was filled with ambition and hope until TB happened to her. Almost five years, later Debashree is on her way to recovery although her family, a middle-class Indian household is under debt. Debashree’s illness ate up their savings and put them into financial problems. Like her, there are thousands of such families who have been pushed into debt and poverty by this disease.
TB is India’s severest health crisis with the highest burden of 2.8 million cases globally and 478,000 deaths each year. An often forgotten fact is that in India, TB disproportionately affects the poor and is an engine of poverty pushing families into debt. A large number of TB affected individuals have unstable incomes and work in the informal economy. Hence, addressing TB is incomplete until we address economic and livelihood issues to help vulnerable individuals fight TB. Further, poverty directly influences nutrition levels, which in turn affects the vulnerability to TB and the recovery from TB when infected. This is especially relevant for women and children who have limited or no economic resources.
The government’s recent proposal to provide economic benefits to TB patients undergoing treatment under the government’s TB program is a landmark patient friendly decision. Under the new scheme, the intention is to provide economic benefits to TB patients who need it the most, helping patients and their families escape catastrophic health expenses and providing some economic security. TB affects a large number of India’s poor due to social, economic and environmental factors. People infected with TB frequently experience severe economic barriers to health care, including high expenses related to diagnosis and treatment, as well as indirect costs due to loss of income. These barriers create economic hardship and prevent or delay TB diagnosis and treatment, leading to increased transmission, suffering and death. Hence, we need to applaud the government’s decision to address economic and livelihood issues as a remarkable and sensitive step to help vulnerable individuals and communities to fight TB.
Making Aadhar mandatory for availing these benefits, poses a considerable challenge for many of these patients. This is because the on-ground realities are quite different. Many patients do not have Aadhar cards, stable employment and housing. Also, the process of obtaining Aadhar is long, and patients who are already battling severe side effects, poverty, stigma and undernutrition cannot easily manage to enrol in Aadhar.
Even when patients do have Aadhar, there have been reports of significant exclusions for genuine beneficiaries in Aadhar linked schemes. A recent study in the Economics and Political Weekly reported that close to 66% households experienced fingerprint authentication errors, Aadhar seeding issues and poor connectivity in Andhra Pradesh.
While linking Aadhar to economic benefits will ensure transparency and curb leaks, it is equally important that officials at the ground level, state level and central level be adequately prepared for these challenges. It is also important that the gaps in digital infrastructure at the state, district and ground level be addressed before such an initiative is scaled up.
This forces us to consider if necessitating the Aadhar for patients fighting a difficult disease is indeed wise. If it is unavoidable and necessary, it is important we consider alternatives as well. If a patient does not have an Aadhar card, the on site personnel should help them enrol at the treatment centre for the same, fast tracking the process as exceptions.
Of course, this is easier said than done because the health workers are often already overburdened. They will require sufficient reskilling and access to technology to speed this process up. Until their Aadhar is generated, a Voters ID card, Ration Card or other proof of identity should be used, and economic benefits should be provided to patients in need irrespective of current enrolment status. This is critical as economic factors, and lack of food-security often pushes patients to stop treatment or give up. If we place any significant barriers to economic benefits, we may be acerbating their suffering and financial desperation.